PACE Trial and PACE Trial Protocol

Now remember that you are a mathematician Graham, and so you are more than likely to get in an absent-minded muddle with simple arithmetic! Have you triple checked your figures?

I'll be looking out for everyone, thanks for that Graham.

I could be out by a factor of 10. So I suggest you try listening between 02:03 and 02:09 in the UK (there's a challenge for you to work that one out!)

5 mins isn't a lot to cover so much - will Janelle be able to show the 6mwt video? Anyway, delighted the project is getting the international exposure it deserves.

@e12. I know, and my 'find' was more than a year too late. In other, better, fields there would be rival scientists on the case who would be able to bring up stuff like this at the right time.

White et al have distinguished between normal and recovery (but failed to make this clear on their paper or during their 15 minutes of fame at the press conference before being parroted by journalists), so the best thing about oceanblue's find is that White was commenting on normal. Up until then, we had White & Bleijenberg & Knoop on co-authored record for using [mean minus SD] on a healthy group to arrive at >=80/100 points as a threshold for recovery, and Bleijenberg on co-authored record for using <=65/100 as the cutoff point to "reflect severe problems with physical functioning".

Bleijenberg & Knoop were not involved in the PACE Trial but wrote the accompanying editorial in the Lancet which falsely claimed that PACE used a "strict criterion for recovery" based on "healthy" persons' scores (>=60/100 threshold), even though PACE did not actually report on recovery nor use scores from a healthy group. Such a sloppy blunder, as if they never even read the paper they were commenting on, defies belief and AFAIK remains uncorrected to this day despite complaints and even a rumoured intention of eventual correction. How else can it be explained that the same people once thought 60-65 reflected "severe problems" in function and now is a "strict criterion for recovery"?

PS - This is what the notorious Reeves et al 2005 "empirical" CDC criteria for CFS has to say:

Damn it, I'm hooked but I can't get it. Clearly as the range has reduced to 6 mins you have not just changed the time diff, but then it depends how you measured the times, only relative to midnight really makes sense but then original range 03:30-04:30 is 210 to 270 mins past midnight so factor of 10 gives 00:21 to 00:27. Then adding 0.5 hrs 5 hrs or even 50 hrs does not get me to the desired answer Alternatively working from 08:30-09:30 gives me 00:51-00:57. Of course I could have been trying to watch instead of taxing my flaccid brain cells on this...

d'oh, just realied the original times were not 03:30-04:30, how could I put that much thought into it and not notice that a 4am meeting was improbable lmao

There is also this from the Trial Identifier:

"We will count a score of 75 (out of a maximum of 100) or more as indicating normal function, this score being one standard deviation below the mean score (90) for the UK working age population."

Glad to have entertained you Dai. As to how could you have missed it, well at least you sorted it out in the end, unlike those who reviewed the PACE trial.

The Phoenix link to the CFSCA session doesn't work for me, but this link does.
http://www.hhs.gov/live/

http://forums.phoenixrising.me/index.php?pages/CoveritLive1/ is working fine for me on my PC, along with http://www.hhs.gov/live/, - they are different.

Edit: this post should be ignored... I got it wrong!!!

NormallyGenerally, when I have seen thresholds for normal values (only in CFS), they choose either mean+1SD, or mean-1SD, whichever cuts off the "worst scores", not both.

Ah, yes, that's what they've done in PACE isn't it!

But I still don't understand why they would cut off 16% of scores.
I haven't yet seen any literature to explain why.

I gave some thoughts on it here:
http://forums.phoenixrising.me/inde...-pace-trial-protocol.3928/page-82#post-272647

(Can't remember whether this has already been said)
In the FITNET Trial:

they gave both sets of figures i.e. mean+(-)2SD and mean+(-)1SD. They mainly concentrated on mean+(-)2SD which gave bigger percentages recovered.

mean+(-)1SD is a nice "round" figure, so that may be one reason for its use.

mean +/- 0 is a rounder figure. Perhaps that is something I should aim for.

Tufty says : "look left, look right but don't even think about it"

Graded exercise was the only treatment claimed to have led to a statistically signficant increase (although its clinical significance is debatable) in the distance covered in the only (but still flawed) objective measure - the 6 minute walk.

Metres walked in 6 minutes was 312 at baseline and 379 after 52 weeks in the GET arm of the trial.

Given that a claimed 40% of participants reached 'normal' physical function, an interesting question is whether these 'recovered' patients might be expected to be able to safely navigate a UK pedestrian (pelican) crossing.

According to official figures, the crossing time during which a pedestrian is protected from traffic by the light system assumes a walking pace of 1.2 metres per second while it is estimated that the average pensioner can manage only 0.8 m/s. Not great for the elderly.

Translated into distance walked in 6 minutes, these equate to 288 metres for the elderly and 432 metres assumed by the pedestrian crossing.

Looks like the average PACE 'recovered' patient would be well advised not to cross the road.

http://www.dailymail.co.uk/news/art...th-trap-pensioner-nimble-walk-4ft-second.html

Hi Marco, therefore also not capable of crossing a street safely at traffic lights? Love the concept. Might lead to a good slogan. Bye, Alex

Hi Alex

Perhaps they may have had more success if they had combined CBT and GET with free membership of the Tufty Club.

A little explanation for non-UK'ers.

http://www.rospa.com/about/history/tufty.aspx

Very nice interpretation Marco! Would you like me to incorporate that into the project opening page, as a comment under the animation?

Hi Graham

Thanks and please use it in any way you can.

Of course this wouldn't have occurred to me if the BBC hadn't covered the pedestrian crossing story in relation to the elderly and once the two figures were mentioned a quick mental calculation suggested a figure of well over 400 while I had a vague recollection that the PACE graduates were scoring in the low to mid 300's.

I think its useful to put these figures into a wider context. Some time ago (perhaps earlier in this thread) I posted comparable 6MWT figures for other illnesses such as heart failure, COPD and MS.

Needless to say they were all very much of a muchness and clearly reflected significant disability. Subjective responses that are interpreted as representing a 'normal range' of physical function require some explanation when considered in the context of the 6MWT figures for the same participants.

The PACE authors may have considered the small improvements as significant but they still weren't enough to earn a Tufty badge which in my book is a real world example of normal functioning!

Here's the BBC's take on it (video):
http://www.bbc.co.uk/news/uk-18437971

Watching the BBC video, when they cross the pelican crossing, I can't help seeing the PACE evaluation project 6MWDT video in my mind!